Being diagnosed with RSD CRPS can cause people to go through a range of emotions: denial, frustration, confusion, sadness, incompleteness, etc. Sylvia writes about what it was like trying to find an answer that wasn’t RSD/CRPS. What happens after the RSD diagnosis? How can you impact your life regardless of the pain?
3 years ago, I suffered a fall and fractured my ribs. From that point forward, it seemed to be that I reached out to any doctor to [try to] understand the pain I encountered. A physician diagnosed me as having RSD, but I thought, surely, this doctor is wrong. So, I continued to research and search for any understanding about RSD and locate any physician to tell me I did not have RSD. The news I dreaded hearing confirmed I was diagnosed with RSD. There is no cure, so, where do you go from the point of diagnosis and what do you do after the diagnosis? Searching countless and excessive research to help me stop the insanity of the pain became a full-time job. Having family and friends get a glimpse and understanding what I was dealing with was a full-time job.
I was placed out of work and my new full-time job became searching for answers and searching for doctors to help me. From injections to consults with no relief. Grasping out to every newspaper, government official and talk show host to spread awareness and no response. Feeling alone and trying to get family members, friends, acquaintances to understand this disease. This truly is a full-time job. I believe unless you experience something yourself, you can truly never understand the depth.
Cancelling plans with friends and family has been consistent as the pain permits me from participating in activities. Finding new ways to do simple household chores has become a challenge but you reinvent a new way to handle. Anxiety has now become an issue. From physical therapy to Yoga to walking, trying anything to keep me occupied in hopes the pain will come to a halt. Feeling alone has become the new reality.
For now, my search continues, but confirmation is that I get through every day and know somewhere there is an answer that will give life back, stop the insanity, and remind myself daily to never ever give up and positivity is a strong force.
Jess was a participant in our very first CRPS Young Adult Weekend this past June. She was more than happy to write a brief blog about her experience and how it changed things for her. Why are events like this so important? Read about what Jess experienced to learn more.
Around 2:30 in the afternoon on Sunday, June 18th I found myself holding back a few (happy) tears. I was driving home after spending the last 45 hours with a group of women who recharged me in a way I had never even dared to hope for. I didn’t want the weekend to be over.
I signed up for the RSDSA Young Adult Weekend with one goal – to go kayaking on the Delaware River. I figured that I would give myself bonus points if I met a person or two who I could have a good conversation with. One of my worst habits is my constant expectation of disappointment, so imagine my surprise when I walked into this group of brave, beautiful, adventurous, determined, energizing, bad-ass rock stars. This weekend blew my mind. The instant connection and pure understanding amazed me. I had no idea how powerful it would be to venture into a community where others don’t just get [CRPS] RSD, they have [CRPS] RSD. I guess there really is something to those support groups I’ve heard about!
This ended up being a collaborative weekend where we all learned from and challenged each other. Some of us learned what our limits are and some of us expanded our limits. We had crucial talks on advocating for ourselves, whether it be in a doctor’s office, with an insurance company, on a college campus, out in the workforce, in a restaurant where the music is too loud, and even within our own groups of family and friends. There were midnight talks in hotel rooms, the contents of which will never leave those four walls. We shared and brainstormed tips and tricks for forming and maintaining relationships, self-care, transitioning from being a child with chronic pain to being an adult with chronic pain, sneaking into a wedding reception, and making the best s’more. I’m so proud to say that we all found adventure in some form on the Delaware River.
Over the last 8 years I have accumulated a lot of different things in my “living with RSD” toolkit. I’ve managed to find some great doctors, I have friends and family that support me, and I have access to a constant rotation of various treatments that keep me moving and grooving (and hopefully some more kayaking). I’ve come a long way from the darker days of my original diagnosis, but up until this weekend I was still too stubborn to admit that I needed to connect with a community that fully understood the burning pain I feel in my bones and the brain fog that steals my precious time. I think my toolkit took a hint from The Grinch and grew several sizes to fit in this remarkable group of new connections. I wish I could go back to freshly diagnosed 20-year-old me and tell her to do more than just ‘like’ a few Facebook pages and subscribe to a newsletter. To anyone out there who has never reached out for support, this is your sign – do it! To RSDSA – keep doing things like this. Keep bringing us together. The hugs may be gentle, but the support is fierce and life changing.
If you would like to donate to help make a Young Adult Weekend happen again, please visit rsds.org/donate!
This blog about CRPS being a wailing, screaming alarm that never shuts off was originally featured on The Mighty. We were given permission to post it as a part of #TheTuesdayBurn, especially since it explains the overwhelming feelings that CRPS can bring on.
One thing I’ve learned in seven years of living with Complex Regional Pain Syndrome is that there is almost no one in the regular course of my life who truly understands what constant, unwavering and intense pain really feels like. I am glad for that fact as I wouldn’t wish this on anyone, but it does make it harder for people to relate to my daily experience. So I am going to try to do my best to explain.
First, it may be helpful to explain, in very generalized fashion, what CRPS is at its core. Now remember, I am a patient, not a doctor, and nothing I am explaining should be considered medical advice or opinion. Basically, complex regional pain syndrome is a malfunction of the autonomic and central nervous system. The autonomic nervous system regulates fight-or-flight along with body temperature and other systemic functions. In CRPS this system gets activated and cannot be turned off, resulting in a feedback loop of pain signals.
The example my pain doctor gave me when I was diagnosed was to think of the big, initial flare of pain you get when you burn your finger or stub your toe, something everyone can relate to. Now imagine some crossed wires in your body become unable to turn off that warning system. That initial pain flare, enough to cause you to jerk your hand away from the flame, or jump around cursing your stubbed toe, never goes away. That warning system has now gone into overdrive – warning you of an injury that no longer exists. And it never stops trying to warn you. Ever.
One of the ways I like to explain it is that it is like a car alarm that malfunctions and can’t be stopped. It wails and screams its warnings and nobody has the code to turn it off. How long would it be before you felt yourself getting annoyed? Frustrated? Distracted? Overwhelmed? Angry? You can maybe close the window, or put earplugs in to try and lower the volume, or turn on the stereo or TV to try and drown it out, but you just can’t escape that wailing, screaming warning. You’ve been to the mechanic, many mechanics actually, and there’s nothing wrong with the car that they can find. They’ve run every test, tried everything they can think of to try to disrupt it, but the car just won’t stop sounding the alarm.
Now imagine you have to keep this malfunctioning car for the rest of your life and it is always within ear shot. You can’t walk away from it. It follows you everywhere. And the alarm never stops. Screaming, wailing, warning of an emergency that isn’t there… Warning!!! Danger!!! Warning!!! Danger!!! Warning!!! Danger!!! Warning!!! Danger!!! Warning!!! Danger!!! Feeling any stress or anxiety yet? That is CRPS in a nutshell. We can takes medication to help manage the pain or help us sleep, but it really can only serve to dampen the “noise,” if you are lucky.
Now I know any rational person would get as far away from that car as humanly possible, but that isn’t an option for me. That screaming, wailing warning is constantly in my head and in my shoulder, neck and back in the form of pain. Burning pain, stabbing pain, aching pain, stinging pain, crushing pain, simultaneously red hot and ice cold. And very, very, loud. There are other symptoms, too, but pain is the big one. And it’s intense. The most intense pain known to man according to the McGill Pain Index, a scientific measurement for pain created by McGill University in 1971.
For most people there is an inciting event such as an injury, broken bone, sprain or surgery, like me. In many cases it can spread to the opposite limb, up or down the arm, leg or spine, and can even spread throughout the entire body and internal organs. It can cause changes in skin color and temperature, excessive sweating, swelling, weakness, muscle spasms, altered hair and/or nail growth, muscle atrophy, short-term memory issues, depression, anxiety and the list goes on. Not everyone has every symptom and some symptoms come and go, but the pain never wavers. There is currently no cure. There are many treatments intended to help reduce pain and in some cases allow for full or partial remission, often temporary. But mostly treatment is aimed at managing pain and keeping or restoring as much function as possible.
It isn’t always easy dealing with the pain, weakness and disability that comes along with a CRPS life, but I do have my ways of getting by and enjoying some quality of life. I hope this helps people understand a little better what complex regional pain syndrome is and what it’s like to live with this horrible disease.
This blog was originally posted on Moonglotexas. Click here to view the original post. This post, entitled “7 Things I Can Do When The Pain Is Too Much” was posted with permission and offers great insight into things that you can do, or try to do, when your CRPS/RSD pain feels like too much.
My CRPS has a habit of flaring up on days I’ve made plans to do fun things that rejuvenate my soul. Snuggled up under my duvet, I visualize the landscape before me trotting along on my horse. I rearrange flower beds, trim branches and try out that great idea from a book. Coffee in hand, I catch up with a friend at the local bakery. It’s all before me and I’m ready to go until I step out of bed!
The nausea rises, the room rotates slowly to the left, a throbbing fills the joints of my hand and a bone-deep fatigue makes the walk to the couch a challenge. A whole day’s plan goes out the window, it’s just not possible. One of the biggest lessons CPRS has taught me is to take each day on its merits and work out, based on how I’m feeling, what can I do today. I still feel the disappointment, particularly about seeing my horse, but working out what I can do has helped make those long days bearable and mostly still fun!
So, here are the seven things I can do when I’m in too much pain to leave the house but not so much that I’m bedridden:
Take a garden gander – still in my PJs, I pull on my gum boots (they are bright pink and clash beautifully with my outfit – quite the sight for the neighbours) and follow my two exhuberant German Shepherds out the front door. My mom has made me my favorite brew and we breathe in the fresh air and the beauty around us. The garden is full of small changes, tiny incremental shifts which I find so encouraging. Spotting that centimeter of new growth, the bright shine to a new leaf or a bud about to bloom but not quite yet, makes it a gentle adventure. Dancing about chasing bugs and following birds, Bessie and Teddy always make me chuckle. Some days, at the end of the front garden tour, I’m too tired to continue so, cuddled up on my verandah chair, I just sit and listen to the sounds of croaking frogs and birds in song.
Bake a sweet treat – I read research that said just the smell of freshly baked goods eases pain and I’m all for that, though consuming it is a favorite part too. I have several simple recipes that don’t take long or take much work and that, combined with a Kenwood mixer and my mom, make it possible. Today was a chocolate cake: all the ingredients in a bowl, mix, bake, scoff!
Read a great novel – well-crafted books pull me into a new world, surround me with new friends and take me on adventures, all from the comfort of my couch (hot water bottle and blankie required). One of the reasons this blog focuses on books is because of the immense joy they bring me when I’m in pain. I’ve come to appreciate so many different genres as I’ve read more and now enjoy a good Christian romance as much as a historic who-dun-it. Some days the migraines or the tired eyes take exception to reading so then I rely on audible books and now even prefer them for some of my stories. Barbara Rosenblat reading Amelia Peabody’s adventures is a treat and you can’t go wrong with Juliet Stevenson and a classic like Austen.
Connect with friends – being confined to home can feel isolating but the world we live in allows us to reach out. On tough days, a conversation via WhatsApp with a friend, a chat on a Facebook post or sharing an article from Twitter allows me to be a part of their day and breaks up mine.
Exercise – I’m not talking about the sweat-breaking, heart racing type but rather the slow movements that release muscles, relieve aches and fight inflammation. I asked my biokineticist for a routine of migraine and neck pain relief exercises which takes 5 minutes to complete but regularly prevents me from needing to take more pain medication.
Rewatch a great series – whether it’s Downton Abbey, Miss Fisher’s Mysteries or Emma, certain TV shows just feel like home and make me sigh with comfort. Familiar scenes and favourite lines relax and engage my mind for a few hours. I like movies but they always leave me trying to think what to watch next (exception made for epics like Harry Potter and Fast and the Furious of course) whereas a series promises hours and hours of endless diversion.
Prayer and meditation – when the lows of the day hit, when the pain peaks or distraction fails, quiet time with God soothes my soul best. I have a 20 minute guided meditation on my phone and Summer Gross’ videos on YouTube are great too, headphones in, I focus on the words. Sometimes, the silence and darkness is just right too.
When these days happen, for those of you who suffer from chronic pain, I hope this inspires you! For those of you who don’t, but read this, I hope this explains a little about our rough days and where you can help.
Don’t forget to check out Moonglotexas by clicking here. More great articles in her blog!
Gabe is back this week to blog about stress, the impact it has on CRPS/RSD and chronic pain, and how to try to manage it. While stress is an inevitable part of life, there are certainly ways to manage it.
“…Chaos calls but all you really need…Is to just breathe.” -Johnny Diaz, “Breathe”
Stress is a normal part of everyday life. It starts as soon as you wake up: getting kids ready for school, finishing a major project for work, or preparing for a big family meal. These are normal, mostly every day, stresses of life. Often times, for the typical human being, it can be hard not to allow these stresses to get the best of you.
Now, add chronic pain into the scenario.
Stress is one of the most vicious attackers a chronic pain warrior can face. If we allow it, it can easily wrap its nasty claws around our neck and choke the energy right out of us, vital energy we use to ward off our pain. This permits our pain to surge out of control and leaves many of us bedridden for weeks on end.
How do you combat this?
Stress is defined as this,
“Stress is often described as a feeling of being overwhelmed, worried or run-down. Stress can affect people of all ages, genders and circumstances and can lead to both physical and psychological health issues. By definition, stress is any uncomfortable “emotional experience accompanied by predictable biochemical, physiological and behavioral changes.” Some stress can be beneficial at times, producing a boost that provides the drive and energy to help people get through situations like exams or work deadlines. However, an extreme amount of stress can have health consequences and adversely affect the immune, cardiovascular, neuroendocrine and central nervous systems.”
That is why, in most cases, stress can be one of the many variables that causes us to have chronic pain.
In article written by Susanne Babbel Ph.D., M.F.T., she states:
“…Experts have noticed that experiencing a traumatic event can have an impact on the development of pain. In fact, approximately 15-30% of patients with chronic pain also have PTSD…During a traumatic event, the nervous system goes into survival mode (the sympathetic nervous system) and sometimes has difficulty reverting back into its normal, relaxed mode again (the parasympathetic nervous system). If the nervous system stays in survival mode, stress hormones such as cortisol are constantly released, causing an increase in blood pressure and blood sugar, which can in turn reduce the immune system’s ability to heal. Physical symptoms start to manifest when the body is in constant distress…”
The definition of a traumatic event is: “A is an incident that causes physical, emotional, spiritual, or psychological harm. The person experiencing the distressing event may feel threatened, anxious, or frightened as a result.” (Source)
This can be either living through a tornado or even as simple as pushing yourself extremely too far past your physical limits.
Information is great and all, but that still does not tell us how to combat stress.
Well, Valerie Bertinelli puts it best.
“…There’s going to be stress in life, but it’s your choice whether you let it affect you or not.”
Stress is normal. The catch is whether or not you will let yourself believe it. It is not going to be easy. Nothing ever is in life.
All it takes is one step in the right direction.
Down below, I am going to leave links to several sites that I have found to be quite helpful with showing techniques of how to cope with stress. I hope they are of great use to you as your journey continues.
Written By Michael Sullivan, PT, MSPT for RSDSA blog.
This post is about understanding CRPS was originally featured on “Fitness for Your Health.” Learn about the pain and how they diagnosis it here.
This week’s topic is one not many know too much about but it can be a very debilitating condition. Those who suffer from Complex Regional Pain Syndrome (CRPS), A.K.A. Reflex Sympathetic Dystrophy (RSD), know far too well how bad this condition is. It is a very complex condition (hence the name), so we have asked the Director of Physical Therapy here at our clinic to explain it.
Michael Sullivan earned his MSPT at Duke University in 1989. He worked in private practice for eight years before deciding to move to help those suffering from chronic pain in a multidisciplinary setting. He joined BAPWC in 2011 and continued to spread his knowledge. He went so far to train a Labradoodle named Seamus to become the clinic’s therapy dog! While his head is like a library of physical therapy, a benefit the clinic staff have all been privy to is his ability to BBQ. The man can cook over an open flame!
Those suffering from CRPS/RSD and those who have never heard of the condition can benefit from this post. CRPS is one of those diseases that sometimes cannot be seen, but those suffering from it can neverignore it. If you have questions or comments, please fill out the form at the end of the post and we will get back to you within 24 hours!
De-mystifing the diagnosing of Complex Regional Pain Syndromes (CRPS)
If you or someone you know has been diagnosed with CRPS and you are better trying to understand what that means, whatever you do, do not search the internet for images of CRPS. Now that I told you not to do that, you are curious and you are thinking, ‘maybe I’ll have just a quick look’. DON’T DO IT! There is way too much of the ‘Worst ______________ Ever!’ phenomena going on out there. Go ahead and fill in the blank with just about anything and do an internet search. Plug in ‘sunburn’ or ‘mosquito bite’. It is enough to have you afraid to go outside in a December blizzard in Chicago without slathering on SPF 120 sunscreen and pure DEET.
Over and over we meet and evaluate people who are looking to better understand this diagnosis and what to do about it. I would like to share with you today information about how the diagnosis is made. By the time many patients get to us they have often been through a myriad of tests and a handful of specialists. Some are misdiagnosed, while others are told that there is nothing wrong with them and that ‘it’s all in your head.’ And while technically, there is a great deal going on with the brain in CRPS, this is not always the intent of the message that is being delivered. CRPS is not a psychological disease, but it is a disease that creates changes in our central and peripheral nervous system, including our brain.
Why is there so much confusion around this diagnosis? One reason is that there is no one test that can be run as definitive proof of the presence or absence of a complex regional pain syndrome. I have seen a CRPS claim denied because the insurance adjuster thought that an unremarkable MRI was proof that nothing was wrong with the patient. Another reason is that the criteria for accurate diagnosis has changed as recently as 2003, with the model being validated in 2010. There is a lot of confusion out there amongst the medical community and the insurance industry that can lead to unfortunate outcomes as improper diagnosis leads to an incorrect treatment plan and often times long delays in receiving appropriate care. Lastly, there is still a lot that we don’t know about the pathophysiology or underlying cause of CRPS.
The gold standard right now for diagnosing CRPS came from a meeting of experts in Budapest in 2003 and is called the Budapest Criteria. Further study attests to the accuracy of using these criteria and this is what your health care professional should be referencing to diagnose CRPS. The diagnosis requires some good old fashioned evaluation skills; talking to our patients to understand their symptoms and evaluating them for the appropriate diagnostic signs. An excerpt from Harden et al. (1) puts forward the following criteria for diagnosing CRPS:
Continuing pain, which is disproportionate to any inciting event
Must report at least one symptom in three of the four following categories:
Sensory: reports of hyperesthesia and/or allodynia
Vasomotor: reports of temperature asymmetry and/or skin color asymmetry
Sudomotor/edema: reports of edema and/or sweating changes and/or sweating asymmetry
Motor/trophic: reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)
Must display at least one sign at time of evaluation in two or more of the following categories:
Sensory: evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or deep somatic pressure and/or joint movement)
Vasomotor: evidence of temperature asymmetry and/or skin color changes and/or asymmetry
Sudomotor/edema: evidence of edema and/or sweating changes and/or sweating asymmetry
Motor/trophic: evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)
There is no other diagnosis that better explains the signs and symptoms
Let’s take a closer look at each of these criteria to better understand them.
Continuing pain, which is disproportionate to any inciting event.
Often times a very minor injury can result in severe signs and symptoms. The belief that there has to be a significant injury to result in CRPS is not accurate. I’ve seen minor ankle sprains, small contusions, and small puncture wounds trigger a complex regional pain syndrome that is just as involved as a person who was run over by a forklift. Immobilization following an injury can be the precipitating factor. Immobilization of even a healthy limb can result in CRPS. Unfortunately, this can provoke skepticism in those not skilled in making this diagnosis, and can lead to delayed care as the nature of the injury is viewed as minor, while the consequences can be quite profound.
What are those consequences you ask?
Must report at least one symptom in three of the four following categories:
Sensory: reports of hyperesthesia and/or allodynia. Hyperesthesia is increased pain with a painful stimulus such that a simple prick with a pin can be a significant pain generator.Allodynia is pain with non-painful stimuli. Some people get tactile allodynia where even light touch can provoke pain; they cannot have a sheet resting on their affected extremity at night or the wind blowing on the affected extremity can be severely painful. In some cases near contact or imagining contact can trigger a pain response. Others may get temperature allodynia where they cannot tolerate warm water in the shower. Some do not tolerate movement, or deep pressure. It is important to recognize that not all stimuli that are painful are harmful. By definition, allodynia does not involve any tissue damage, rather sensitization of the nervous system will send information (nociception) to the brain that is processed as pain.
Vasomotor: reports of temperature asymmetry and/or skin color changes and/or skin color asymmetry. Patients will report that the affected extremity is to cold or hot to touch, the extremity can become mildly to severely discolored.
Sudomotor changes/edema: reports of edema and/or sweating changes and/or sweating asymmetry. Hyperhydrosis, or excessive sweating is a common description to the point that people will describe one hand or foot dripping with sweat while the other is completely dry. Edema, swelling in the soft tissue, may come and go without reason.
Motor/trophic: reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin) This is fairly self explanatory in the person’s experience and fairly complex to explain. Motor changes occur due to changes in the brain that are referred to as neuroplastic changes. Our brain is constantly changing in response to all that it processes including sensation, joint position, movement, smells, tastes, sights and sounds. Changes in specific areas of the brain can result in diminished quality of movement affecting our ability to plan movement and execute movement. Trophic changes can include thinning fragile skin, excessive hair growth, ridged nail growth or loss of hair and absence of nail growth.
As you can see, there are a very wide variety of symptoms experienced by the person with CRPS and they can change frequently. This can be baffling to providers not accustomed to treating this disease. These symptoms usually involve one limb and my experience is that most people can draw a line on the affected extremity indicating where their symptoms end or will describe symptoms diminishing as you move up the limb. In approximately 7% of CRPS sufferers symptoms will spread to other body parts.
Must display at least one sign at time of evaluation in two or more of the following categories: This is the same list as above, but now the evaluating clinician has to observe at least one of these findings in two or more of the four categories in order to make a diagnosis. As a frequent caregiver for people with this condition, I can tell you that many of these signs can change rapidly. I could be looking at a normal colored limb, equal in temperature to the contralateral limb with no swelling and then have a stressful conversation with the patient and watch the affected limb change colors, get cold and sweaty. Conversely other CRPS patients have more stable findings: a deep purple limb that is cold and damp to touch, allodynia with light touch that is well defined with swelling and a tremor when attempting to move. If you have one of these limbs, your chances of being diagnosed are likely greater. An evaluator doing a quick one time evaluation at the ‘wrong time’ may not see any of these signs and discount the diagnosis. If symptoms are consistent with diagnosis, but signs are lacking a prolonged evaluation or repeat visit is recommended prior to coming to a conclusion.
Sensory: evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or deep somatic pressure and/or joint movement). Some people will be fine with light pressure, but not with deep pressure or the other way around. Some will have no allodynia or hyperalgesia. Some will begin demonstrating distress if anyone nears their affected limb. We always ask if it is OK to touch before we approach.
Vasomotor: evidence of temperature asymmetry and/or skin color changes and/or asymmetry. We use an infrared thermometer to get hand or foot temperatures without triggering a pain response. Any temperature differential between contralateral limbs greater that 2 degrees Fahrenheit is considered significant.
Sudomotor/edema: evidence of edema and/or sweating changes and/or sweating asymmetry: Lightly touching a palm or the sole of the foot to check for moisture changes is effective. Swelling can be mild or severe and may be intermittent or constant.
Motor/trophic: evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin): assessing active range of motion for joint restrictions also gives information about the quality of the movement. Adding some resistance with strength testing when pressure is tolerated can reveal more motor control problems with exertion. Some people will assume a fixed posture with the affected limb that and won’t tolerate any movement with increased muscle tone present (dystonia). Trophic changes are easy to see when comparing an affected to a non-affected extremity.
There is no other diagnosis that better explains the signs and symptoms: if the presence of known trauma or identified disease can explain the signs and symptoms then a CRPS diagnosis is not indicated.
Our patient experiences indicate that there is a need for increased awareness of CRPS in all facets of care delivery. The lack of a stereotypical presentation is common, but sticking with the Budapest Criteria allows one to consistently make an accurate diagnosis, which is key for delivering effective therapies. This is a very complex topic and my intention is to help educate people on the proper way to diagnose CRPS in a way that is easy to understand. In the process of doing this I have glossed over many other aspects of the disease including pathophysiology, specific neuroplastic changes as a result of the disease, classifications of the disease and the types and rationale for treatment. We can leave those for another time.
To those of you struggling with CRPS, our quality of care and knowledge increases every year thanks to a lot of good people doing research and administering compassionate care based on the science of this disease in particular and chronic pain in general. There is help available. I would like to recommend a couple of resources. I don’t benefit in any way from recommending these resources, but appreciate the work being done.
For those of you who want to dive a little further into the Budapest Criteria previously mentioned see:
Validation of proposed diagnostic criteria (the “Budapest Criteria”) for Complex Regional Pain Syndrome
For those of you who would like to learn more about how acute and chronic pain differ I highly recommend the work of the Neuro Orthopaedic Institute and in particular the book Explain Pain. It speaks to clinicians and patients alike. David Butler and Lorimer Moseley are innovating care for CRPS based upon their findings.
I’m looking forward to reading their follow up to Explain Pain just out.
For a first hand account of a physician who has suffered with chronic pain and discusses how this has specifically influenced his care model while walking you through the maze of treatment options Dr. Peter Abaci’s books ‘Take Charge of Your Chronic Pain’ and ‘Conquer Your Chronic Pain’ are instructive and easy to read. They can be found on Amazon.
Disclaimer: I read Dr. Abaci’s first book in 2011 while looking for like minded professionals to help treat chronic pain. I have been working with him ever since.
For those of you looking for more CRPS specific resources The RSDSA has been on the forefront of CRPS research and advocacy for the past 30 years. They can be found at rsds.org/
Guest blogger Gabe returns this week. After his blog entitled “A Thorn in the Flesh” was well-received, he returns to write about how CRPS pain can change you, but it doesn’t need to be in a negative way.
“Don’t let pain define you, let it refine you.” -Tim Fargo
With chronic pain, it can be very easy to allow it to define who you are. You can feel like just giving up and allow it to control every inch of your life, letting it decide who you can be.
In all honesty, I have found myself doing the exact same thing. Because of how extensive and unpredictable our condition is, we find it extremely difficult to set and attain goals. Every time we set out with good intentions we find ourselves shortly thereafter in so much pain that we feel defeated before we even start. Things that usually help us cope with the pain, after a while, stop working. We are constantly having to adapt to this illness. Sometimes, we just want to throw in the towel, saying, “What does it matter if I plan to do this now? I won’t be able to when the next surge of pain comes along.”
To put this in a matter of perspective, imagine you are a fort being defended by a small garrison of soldiers against a larger, menacing foe. Your enemies have the ability to be invisible until they attack, making your job of defending even more difficult because you do not know from where the attack will come. To make things worse, your enemies are not mindless barbarians, but super-intelligent aliens, so they are very quick learners and will never attack the same way twice and never let up. Because of the relentless onslaught, your soldiers are constantly on the brink of total surrender.
Now, let’s change up a few things in this scenario. What if we replaced our extremely exhausted soldiers with adaptive, super robots that will constantly take the enemy’s attacks, and, with equal strength, push back, seeking new ways to combat and overcome the unrelenting forces.
Wishful thinking, right? What I am trying to say is that one of the key things we need to do is just like Tim Fargo stated, “…not let pain define you, let it refine you.” Some of the greatest people in history were refined through their pain, from Steven Hawking to Helen Keller. If they could overcome their struggles, can we not do the same?
You may not need an army of adaptive, super robots to help you fight your battle with chronic pain, but not allowing it to define you is a good first step toward victory. Choose not to be defined, defeated by this invisible enemy, but choose to be refined daily, facing it head on.
To write about CRPS is to expose a part of yourself that is vulnerable, but so important when it is shared. Members of our community have voiced an interest in writing about CRPS, but didn’t know where to start. Here we go!
Writer’s Block. Anxiety. Fear. Overwhelming thoughts. All of this contributes to an issue that I hear about all to often. Members of the CRPS community want to write about their experiences, both good and bad, but it can be incredibly difficult to find a starting place. How can you get past the barriers to write about your own experience, whether it’s for public viewing or for your eyes only?
Finding a starting point for you writing can be the most difficult part. Brainstorming can help you find the topics that you would really like to write about. Take about one to five minutes and write down every topic that you can think of that pertains to your CRPS. From the day of your diagnosis to meeting your first CRPS friend, write down anything you can think of. Think about your passions in life. Do you like to cook and have had to make adjustments to accommodate your CRPS? Were you a dancer that now choreographs from a chair? Did you find a new hobby because of CRPS? Anything is up for grabs! When time is up, review your list. Circle the topics that you think you could write a detailed piece about. Is there one that sticks out the most? Great! Let’s go from there.
I have always been one that likes to map out my thoughts. I still utilize a tool I was taught in 2nd grade. Take a blank piece of paper. Write your topic in the middle and circle it. Think of at least 3 main points you can write about for this topic and have them web off of the main topic. Then, add your details about each point around it. Then, all you have to do is put it into sentences. I put a sample of my mind map below (yellow is the main topic, blue are the supporting ideas, green are the details for the supporting ideas). Try doing this for a few ideas until you find one that you can’t stop mind mapping. This topic would be something great for you to write about!
With writing about CRPS, more obstacles than Writer’s Block come up. It can be scary to put yourself out there. So many of us living with CRPS have been judged at one point or another, or have been told that our diagnosis isn’t real or to get over the pain. That’s the beauty about writing though. Your thoughts and opinions are your thoughts and opinions. Your experiences with CRPS are your experiences! They may differ from mine, Jane Doe, and John Smith’s experiences, but that’s the amazing thing about sharing your writing. We can all learn from each other. Within every story is something to learn and something to relate to. You never know who you could help by sharing a story about the time you went to Reiki or acupuncture, or to aqua therapy. Whether your experience was positive or negative, people can take that away from your piece. Here at RSDSA, we try to keep a supportive environment. Everyone is entitled to their own opinion, but we ask that people comment respectfully. Remember, no one can discredit your experience as a human being.
Once you get past your obstacles and start writing, reference your mind map to help you through the process. If you start to get stuck or frustrated, take a step back from it for a little while. Stressing yourself out about writing will not help your CRPS. But, as soon as something sparks in your brain, go back to your writing and get it all out. It may take you an hour, a day, a week, a month, or even longer. Writing is a process, and each process is different.
When you do finish your piece, consider submitting it to RSDSA for TheTuesdayBurn. We are always looking for writers to submit their experiences, opinions, and overall thoughts. You can submit your piece of writing to [email protected]. We like to try to have our blogs be over 400 words and to include a picture related to the topic. We want to hear from you!
This blog was originally featured on Gabe King’s blog site Treasures on the Sand. This blog was submitted to us by Mr. King with full permission to share his chronic pain journey.
For many of us with chronic pain, we can only remember suffering. It can be very hard to think of the times that were pain-free, living our lives like normal human beings. However, this is not the path Our Heavenly Father has in store for us, for He has a greater purpose at hand. Though this is the case, it can still be a difficult journey, walking through life with what the apostle Paul referred to as a “thorn in the flesh.”
I wanted to share with you my own journey, from its early beginnings to the present. I hope that you can find encouragement from it, no matter what stage of life you are in right now.
In October of 2013, while at a fencing practice, I popped my back during a routine exercise, causing my back to ache for at least a week. Eventually, the pain subsided, so we thought nothing of it.
From November to December, while in the midst of performing as “Scrooge” in A Christmas Carol at our local community theatre, I contracted two respiratory viruses back-to-back, causing immense pain in my chest. I went to our family physician, who, after finding nothing on my chest x-ray, diagnosed it as costochondritis, gave me an inhaler and Z-pac, and sent me on my way. The chest pain continued, along with fatigue from constantly being in pain.
January of 2014, the pain decreased and I began to feel better. This was not to last,
however, and by February my pain was back with a vengeance. We returned to our family physician. This time, he ran blood tests and gave me 1000mg of Naproxen to take once a day. Finding nothing on the tests and having no relief from the pain, I was once again diagnosed with costochondritis and told to go to the ER if it did not improve. In March, as the pain intensified, we went to an ER and had a chest x-ray and blood work done. Both came back clear…again, and we were back to square one.
April added a new layer to the mystery as my eye became inflamed for several weeks. We tried treating with redness eye drops, Neosporin drops, and allergy medicine. Nothing touched it. We got in with a pediatric ophthalmologist. She believed there was a connection between the chest pain and the eye inflammation, gave us prednisone drops and pills to see if they helped, ordered full blood work to be done, and referred us to a pediatric rheumatologist. The blood work, of course, came back normal, so we waited for our appointment with the rheumatologist.
In May, while waiting to get in with the pediatric rheumatologist, we went to a regular rheumatologist at UVA who believed that it was not a rheumatoid issue, but a muscular one, and decided to give me twenty cortisone shots in my chest wall. Needless to say, it was not a pleasant process, nor did it have its intended effect of relieving my pain. In fact, not long after, the pain began to spread from my chest to both my legs and arms, making it harder to participate in daily activities.
A few weeks later, we had our appointment with the rheumatologist. This is where I was first diagnosed with RND, Reflex Neurovascular Dystrophy. (RSDSA Note: RND and AMPS are used as names for pediatric CRPS). After running another batch of tests to prove his diagnosis, he gave us information on a Children’s Hospital in Pittsburgh that specialized in treating RND and sent us on our merry way. We never heard from him again nor were we able to get in touch with him.
We researched Pittsburgh and found they treated RND with intense physical therapy, along with psychological therapy. It sounded promising, but as we began the process to get scheduled with them, we looked deeper to find that they had a rather large percentage of patients who, within a year or two, had a recurrence of the RND. Though the possibility of being free of pain for a short time was great to hear, the fact that it would be short-lived struck me like a dagger in the back. I wanted to be completely cured, not halfway cured.
So, during most of the Summer of 2014, we sought out other means, from aqua therapy to a tens unit, all to no avail. We even went to a pediatric neurologist, who turned me away because he “couldn’t help,” pretty much saying it was all in my head.
Finally, in the middle of June, I gave it all to my Father, and He gave me a reprieve and allowed me a full month and a half without pain. Though I may not have known why He decided to grant me this gift, I understand now that it wasn’t a gift, but a message; a message that would take me two more years to figure out.
That fall, the pain reared its ugly head again, radiating out from my chest to my back, arms, legs, and hip. At this point, I was working part-time at a restaurant in town. I had to quit that job due to the physical limitations from my intense pain making me unable to continue.
Over the course of 2015, I had to limit most of what I loved to do, acting, fencing, singing, and other extra-curricular activities, because the pain was becoming unbearable to the point I was having a hard time getting out of bed. We tried everything from Lyrica to Maxalt. The only medication we found that helped was Cymbalta, which mainly allowed me to sleep through the night without waking up in excruciating pain. When the pain would get severe, I would take a Hydrocodone, which only knocked me out, but it allowed me to rest for a short time.
It was at the beginning of 2016 that it began to up the ante, from the death of my grandfather to living through an EF-3 tornado to our eventual move to North Carolina in the fall. The stress of all those combined caused my pain syndrome to spin out of control. I was taking classes online at the community college nearby and had the hardest time passing with good grades because I could hardly focus with all the pain.
When we had officially settled in NC, we set up an appointment with a nearby neurologist, who was highly recommended by members of our church for persevering to find answers. He diagnosed me with AMPS (Amplified Musculoskeletal Pain Syndrome, for more info, click here) and, after poking and prodding me, decided there was nothing he could do and left me to fend for myself.
This was the final straw for me. I had finally had enough with doctors and medications, and finally came to grips with the fact that my Heavenly Father has allowed me to bear this burden for a greater purpose. And so, that brings us to the present, where I currently am endeavoring to go through life with this “thorn in the flesh.” Yes, I may have my bad days, but I still strive to fight this vicious disease and glorify my Father through the path He has in store for me.
This Disabiliday blog was originally featured on Pain Matter‘s website. It was submitted to us by Paula to share with our wonderful #TheTuesdayBurn community. We hope this helps inspire all those living with disabilities, especially CRPS/RSD.
“You may remember Paula Orecklin, the inspirational Canadian CRPS patient whom I wrote about in yesterday’s blog post:
(There are additional References and Links at the end of this blog post.)
This week, Paula sent me a beautiful letter to share with all of you (see below). Paula’s letter contains a very important message for everyone, on behalf of all people living with disabilities including chronic pain. I feel delighted and honoured that Paula decided to share her inspiring letter and beautiful photos with my Pain Matters Blog (as well as any other media that Paula chooses). Upon reading Paula’s letter, I thought to myself, “Paula’s idea to start a ‘Disabiliday‘ tradition for patients whose lives are challenged by disability and pain is fabulous! In fact, any day, whether it is April 1 or otherwise, is a great day to celebrate people who face adversities and obstacles due to disability including pain, and to also be grateful for our own blessings.”
Quoting from Paula’s her own words written to all of you from the bottom of her beautiful, caring and generous heart:
“This past Saturday, April 1, 2017, I held the world’s newest disability holiday – Disabiliday. I just entirely made up a holiday. I figure someone has to have started every other celebration, so why can’t I do the same? Last year, I had my 15th anniversary of having Complex Regional Pain Syndrome, a severe chronic pain disease. With such a large milestone, I knew I could either get very depressed, or make something positive out of it. It wasn’t something I could just ignore. Instead, I chose to make a celebration out of it. I hadn’t just been in pain for 15 years – I was in pain for 15 years and was still going. It became my Disabiliday.
The event turned out to be so positive and wonderful that I decided to hold a second one this year. I ended up making more progress this past year than I ever had, in terms of function and ability. I wanted to celebrate that as much as anything – that I’ve been in pain for 16 years and am now going somewhere. I don’t really know where yet, but I figure I have another year to figure that out.
I think Disabiliday could also be relevant to other people with disabilities. When you’re disabled, you can often feel isolated, or like you’re not having the same kind of lifetime milestones other people have. Maybe you can’t move out and have a housewarming, or maybe you can’t have a long term relationship with engagement and marriage and babies. Of course, plenty of people with disabilities do just those things and I’d never discount them or their lives – but I, at least where I am right now, don’t feel like I’m able or ready for them. And even birthdays can feel like you aren’t where you should be in life, especially compared to people around you.
So I wanted to do something new and different. I wanted something that fit where I am in life, where I am emotionally. And thus, Disabiliday. A day to celebrate that despite the amount of pain I’m in, despite the limitations my disease has enforced, I still am. I still have worth. I still have a presence in people’s lives. I still am going. Surrounding myself with the support structure I’ve been so lucky and honoured to have found in my life, I was able to sit back and take in just how many people love and care about me. Without them, I would never have gotten through so many years of pain. They’ve made the time worth it.
Disabiliday is a way of reinforcing my place in life. The place in my life, and in my family and friends’ lives. Emotionally and psychologically, all of the normally invisible ways people care were made evident. It might seem silly to just make up a holiday out of nothing but a terrible pun my friend came up with to have a Disabilitea Party that I later expanded because if I’m going to make up a celebration I might as well get a full day out of it, but the meaning really is there. And it was a lot of fun too. I got my hair and makeup done at Sephora and Mario’s Salon (now Aura Polo Park) respectively last year and felt amazing once I was all made up. This year I got my hair highlighted, trimmed, and makeup all done at Aura Garden City. It’s superficial to some extent, but I felt so much better once finished. It’s an external thing, of course, but that doesn’t mean it doesn’t matter.
Last year we went to Sam Po Dim Sum and also introduced all of my non-Jewish Winnipegger friends to the deliciousness that is a shmoo torte from Gunn’s Bakery. It’s this layered angel food and whipped cream confirmation that’s North End of Winnipeg Jewish tradition.This year I upped my game with a wonderful dinner at Kildonan Park’s Prairie’s Edge restaurant and a cane cake from Dolce Bake Shop. I’ve used two canes for quite a few years now (when I wasn’t in a wheelchair), and I’m finally, finally starting to walk on my own. In fact, I made a great entrance to my party by walking in. That alone made the night amazing.
Photo Credit: Dario Schor
But I wanted to step it up. I went to this awesome bakery (I recommend the chocolate cupcakes with pistachio buttercream icing) and had the pastry chef make a custom cake for me- a replica of one of my canes. And man, did slicing that thing up feel good!
Photo Credit: Dario Schor
Other highlights of this year’s Disabiliday party included a featured guest, my physiotherapist Maria Pawlyshyn of Movement360 Inc. She is a huge part of why I’ve made so much progress this past year. Working with her, I’m doing better than I ever have since developing Complex Regional Pain Syndrome. Other features included a dinosaur balloon- a DisabliT-rex of course (I hate myself for these puns just as much as you do) – and a truly stunning purse my mom and I designed and she made for the event (see top photo). We’ve made a lot of purses over the years, but this one has to be one of the best. Just really gorgeous. The writing on the front of it is my handwriting.
Photo Credit: Dr George Fulford
We also filmed the Disabiliday parties for a documentary Dr. George Fulford of the University of Winnipeg and I have been filming for a few years now, with the assistance of Steven Mellor for sound. Originally meant to be the first of a series of five minute videos of young adults with disabilities, this project has ended up capturing the huge amount of progress I’ve made over the past couple years. I was at my worst, nearly entirely wheelchair bound, when we started this project and I’ve made such huge gains. To actually walk on my own – I never expected ever to do that again in my life.
In other bragging about things news, my wonderful friends got me the most amazing sets of rings for a Disabiliday present. This isn’t quite as materialistic as you might think. For many years now, I’ve developed open sores and wounds all over my body. My doctors think that with the amount of pain I’m in, always, the skin has just sort of gotten very weak and opens up into wounds. I don’t do anything to create them, I’d like to explain – they just open up without any influence or action on my part. They eventually close up but leave scars. Even though the scars eventually start to fade, it doesn’t help because more new wounds have already opened up. To detract attention from all of my wounds, I wear lots of rings (and wear makeup) to both cover up wounds on my fingers and to attract attention away from wounds on the rest of me. My friends know this, and so rings really do mean a lot to me. Plus they are adorable and I totally love them too.
So Disabiliday does really have some meaning. One one level, I realize how weird – and how self-important – it is to make up your own holiday and expect people to celebrate it. On another hand, this matters to me, and my friends honestly do support it. If it makes me feel better, if it doesn’t harm anyone else…why not? Maybe a lot of people – if they were to ever even hear about it – will think me stuck up or even that I’m celebrating being a victim of my disease, but I can’t help that. All I can do is lay out my reasoning here and hope maybe other people might understand. That’s really all anyone can ever do, really.
Finally, I want to thank Prairie’s Edge for hosting us, Dolche Bake Shop for a delicious cane, and Aura Garden City for totally making me over. And I really want to thank my best friend, Eryn Schor, for not only organizing both of my Disabiliday events, but actually sticking around for the better part of five hours as I got all made up. Now there is a truly loyal friend! She means so much to me and has been by my side since we met in elementary school. Without her, these events would never have happened. Thanks also go to Dr. George Fulford for filming the whole event – and for filming my life over the past few years, and to Steven Mellor on sound. Dealing with that boom mike was not easy!
And lastly, thanks to my parents. My dad was unable to be in town for the event, so we just got him on Skype on a phone to take some family photos. With my parents, all of my friends, and my health care providers, with all of their love, care, support, understanding, work, and through their thought, research, and education, I can truly say that despite the amount of pain I’m in, the past 16 years have been entirely worth it.
Happy Disabiliday!”
Photo Credit: Dario Schor
I am certain that most of you will be equally touched by Paula Orecklin’s letter just as I am!
Sabina Walker, Pain Matters Blogger
PS Are there any thoughts on Paula’s idea of a ‘Disabiliday‘ tradition from the rest of you in ‘Pain Matters Blog Reader-Land?’
FURTHER REFERENCES AND LINKS ON PAULA ORECKLIN, CRPS PATIENT:
Written by Guest Blogger Sylvia Miller
Written by Guest Blogger Jess Henry-Cross
Written by Guest Blogger Roberta Hierath
Written by Guest Blogger Kelly Hodgkins
Written by Guest Blogger Gabe King
Written by Guest Blogger Gabe King
